Tuesday, April 09, 2013

Why You Should Think Twice Before Finding Disabilities Inspiring

I want to have an honest conversation about "inspiration" and disability.

Be forewarned: this could get sticky. But I think it's important to have these sorts of conversations, even if we don't quite know yet how to say what we mean. It's even important for me to have this conversation even though I'm not a member of the disabled community and can't speak for them.

I started thinking about this in ernest after I read this post from a woman talking about the Paralympics and how proud she was of the athletes but also how nauseating she found it when we congratulated ourselves on finding them so inspirational.

"When you say that we’re inspiring, whether we’re doing ordinary things like getting groceries or taking public transit, or extraordinary things like developing groundbreaking medical technology or competing in elite athletic events, you’re othering us. You’re saying we need to be singled out as remarkable because of our disabilities, and it pushes us further to the margins."

I also liked this tweet she quoted about why the "inspirational" word can get under people's skin:

"@vworpvworp: It objectifies the hard work I've done, that my community has done, without challenging the attitudes that make it hard."

It got me thinking of the mixed emotions I feel when people tell me they could "never" do what I do. I feel a sense of pride, but I also feel it "others" me to a place where they have no right to relate to my struggles and I am so far beyond help that I could never relate to theirs.

These emotions started pinging around when I got forwarded this video about a dog and a girl with Down syndrome interacting.

(video)

It's all cutesy and soft focus, but I couldn't help but feel like "umm… it's a dog playing with a baby. Cute. But nothing extraordinary." I figured I just was being grouchy and moved on.

Then this video started flooding all over my Facebook feed:

(video)

It's a story about two brothers who compete in races together. Why is that special? Because one of them has severe cerebral palsy so the able-bodied brother pulls him in a bicycle cart.

I'm not saying this video isn't inspiring. There are a lot of awesome things about these kids' story: brotherly love, perseverance, the notion that winning is not as important as doing something together.

But it reminded me of this other video of twin sisters I saw a while back.

In both of these stories, I got the funny feeling like the person with the disability is almost a prop, not a real person with their own side of the story to share. Instead they are presented as this negative force on the family who is bravely overcoming it, like a natural disaster.

This is where it gets sticky. Because, as I've argued before, a disability is a hardship for the entire family and white-washing over that is to deny a basic truth. I also agree that disability is interesting, and a story about a person with a disability doing something is often more poignant than a story about a typical person accomplishing the same thing.

So I'm not arguing that we should just be "disability-blind." But take another look at those videos. What is it that we find truly stunning? What is so beautiful, remarkable and worth sharing about them?

I'll tell you. It's that in each, the dog/the brother/the sister is very naturally and effortlessly treating the person with a disability with exactly the same amount of love and respect as they would were they typical.

That is such a foreign and awe-inspiring concept to those of us who did not grow up around people with disabilities. Before I had Malachi, I was very nervous about what exactly it meant to have a disability and how people with disabilities would want to be treated. For the most part, I ignored them, thinking that I was doing them a service by not staring or singling them out or expecting them to tell me their life story because they happened to be visibly impaired. And perhaps for some that was appropriate. But I certainly didn't do it because I felt comfortable around them.

In a segregated school system, I rarely interacted with people with disabilities as peers, so I didn't develop the necessary familiarity.

Imagine, therefore, having JJ's perspective. Malachi has always been his brother and has never been able to move around like he does. I doubt it has ever crossed his mind that Malachi could or should move like that. To JJ, Malachi is just his brother, no more, no less.

(video)

Now. How did that video make you feel? Was it just cute? Or was it "inspiring"?

When we make someone "inspirational" are we ultimately doing them a service?

Or are we putting them on a pedestal without working to figure out why they need to be raised up in the first place?

I snuck this in as a bonus post to as part of Special Needs Sibling Week, a series on siblings of people with disabilities in honor of National Sibling Day, April 10.

Wow - this is a tough one. Yes, I agree with the yuckiness of "othering." When people give me the you're so amazing to be parenting Aidan - I feel like I'm on a pedestal and have no where to go but down. I LOVE the tweet about not challenging the attitudes that make disability hard. The only caveat I would add is that I want to actively celebrate the accomplishments of people with disabilities to counter-act the "they can't do that" belief. The more public the celebration of these feats, the easier it is for me to expect people to have higher expectations for Aidan. Yeah, there's a lot of grey area here.

And the video of JJ and Malachi was definitely cute but not b/c of Malachi CP - so you're right - we should all be treating each other this way.

"It's that in each, the dog/the brother/the sister is very naturally and effortlessly treating the person with a disability with exactly the same amount of love and respect as they would were they typical."

You got it exactly right! In many countries people with disabilities are not seen as people of worth. They are hidden, disposed of and denied equal rights. Even in the US it is not uncommon for doctors to recommend abortions for women who discover their babies are disabled. It's as if they are saying having a disability is not a life worth living. I find my daughter and her friends to be incredibly inspiring and I will always proudly share their accomplishments!

Books by Shasta Kearns Moore!

Prayers, thoughts, well-wishes, intentions, good vibes, whatever

Here are a few key things on our cosmic wishlist for Malachi's recovery. I don't care who you address your requests to, but I do believe you can help us right now by taking a moment to ask your divinity for these things:

» The patience and stamina to explore his body and what it can do.

» The ability to swallow food and liquids normally.

» Stability through his trunk, including strengthening the flexor muscles.